In today's episode, I sit down with the incredible Aidy Smith to discuss our personal experiences with Tourette syndrome. From the challenges of getting diagnosed at a young age to confronting the stigmas we've encountered, we share our most personal stories and insights. Listen in as we unravel the complexities of living with Tourette and explore why some of us even view it as a superpower.
Links & Resources:
- NJCTS: https://njcts.org/
If this episode resonated with you, I'd be grateful if you could rate, follow, and share it. Your feedback means the world to me, so please leave a review. Together, let's foster understanding and compassion in our community.
In today's episode, I sit down with the incredible Aidy Smith to discuss our personal experiences with Tourette syndrome. From the challenges of getting diagnosed at a young age to confronting the stigmas we've encountered, we share our most personal stories and insights. Listen in as we unravel the complexities of living with Tourette and explore why some of us even view it as a superpower.
Links & Resources:
- NJCTS: https://njcts.org/
If this episode resonated with you, I'd be grateful if you could rate, follow, and share it. Your feedback means the world to me, so please leave a review. Together, let's foster understanding and compassion in our community.
Aidy Smith 00:00
It was around about the age of nine or 10 when I actually got my diagnosis and fast forward years and I just I never spoke about my Tourette syndrome at all. In fact, even the word Tourette like we had to call it the T word. I was so embarrassed by it. I was so scared by it I couldn't be said around me it was like saying Voldemort in Harry Potter is just a word that she could not use. And if I ever heard that word in public, it would send shivers down my spine and I shatter into a million pieces. Because when I was growing up, I was always made to feel so ashamed by it. I didn't know anyone in my community who had Tourette you know, no one was there to make me feel calm will comforted by it. It was just this weird thing that I was made to feel like I was coming to some kind of circus freak.
Michael Leopold 00:44
Welcome to the UpTick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and thank you for joining this episode of the uptick. I'm thrilled to be here today with Aidy Smith. Aidy is a London based award winning TV presenter, journalist and speaker. He's one of the world's only TV hosts with Tourette syndrome. And he's the executive producer and presenter of the hit Amazon Prime series, the three drinkers, he has a passion for good drinks, lifestyle, travel and diversity topics. And he's a powerful advocate and spokesperson for the LGBTQIA plus and disability communities. He also recently launched a new Tourette documentary, The truth behind the tick, which is available on Spotify and other streaming platforms. Aidy it's great to have you here today.
Aidy Smith 01:45
Thank you so much for having me. It's great to see you again.
Michael Leopold 01:48
You as well. Well, I wanted to chat about the the documentary that you just came out with I understand it's a two part series. The first just came out last week on TBS. And then the second part is on ADHD. Talk to me about what inspired you to produce these?
Aidy Smith 02:03
Yeah, absolutely. So I'm really on this kind of mission to get out as much neurodiversity content as I possibly can. And so I'm trying to team up with a lot of the larger radio stations or broadcasters, in order to be able to do this. There is a station in the UK called Virgin radio, which is one of our biggest stations over here. And they have a station that they bring out for about six months of the year called Virgin radio pride, where they essentially look at LGBTQIA plus topics, topics about ethnicity, representation and topics about disability diversity. So it sounded like the perfect platform to work with them on some documentaries. So I got to two separate documentaries that have come out the first one being on Tourette syndrome, and the second one being on ADHD. But I mean, it's fascinating looking at both them because as we know, around 85% of people with Tourette's have a co occurring condition. So for those of us who have ADHD or think we might have ADHD, it's actually a really intriguing listen as well.
Michael Leopold 03:01
No, absolutely. And getting more awareness on this as always great. What's the reception, Ben and I know that this just was within the last week or so have you had any sense so far of the reaction it's getting?
Aidy Smith 03:13
Yeah, I mean, it's Genoa is brilliant. And I'm so thankful for the support. I think that our community just phenomenal as soon as a piece of content comes out that does the right job that has the right messaging to be able to help them and push us forward and get momentum. People really embrace it. And I've had countless people reaching out, not just to kind of say, This is great. I've been inspired by this. But at the same time parents getting in touch to ask questions about their kids who may have Tourette about a new diagnosis someone has. And for me when I get more of those questions coming through that is a sign of success. Because that shows that this documentary has reached the people who need it the most, who are able to ask those questions and who are able to be you know, guided on that journey. I think one of the major things that we need in the trek community and the kind of the next big hurdle we need to overcome is allowing people to embrace who they are feel like they belong. And that's what this kind of content does when it's done correctly. Because I will add that there have been many things in the past, as we know in the media that focus on either just one element of Tourette syndrome, or you know, they'll have a whole shoot done, and they'll pick out on the most extreme tics that someone has, which isn't a true representation of how they actually are. And that's all for entertainment purposes, this documentary that we did here. Sure, it delved into the hardships. And it delved into the challenges that we as a community face, we looked at the stigmas and the misconceptions that plague our community and really make life a hurdle and a challenge for us. And we tapped into the harrowing rates of people who consider or actually take their own lives. Because this is the most mocked condition on the planet. There is no getting around that. And we take a deep dive into those hot topics because they're real, they're a reality. At the same time, we take a look and have a glimpse of another side of Tourette Syndrome. That is our remarkable ability to thrive. And you know, when we take that excess energy that goes into our tics and we re channel it into what we love doing, we do become that force of nature, it does become a superpower. So we touch upon all angles of what it is to live with Tourette Syndrome, the good, the bad, the ugly and the beautiful. I
Michael Leopold 05:26
love that there are so many things in there. I'm excited to dive into I want to start with the comment you made around making a a well produced Tourette educational like informative piece. And and you mentioned that it can be done right it can be done not right. I want to focus on what makes something good, you know, and if we want to be advocates for Tourette, one of the challenges I see is that Tourette is idiosyncratic. You know, it's not like you can just meet a person with it and okay, I understand Tourette now, all of us are different. We have not only variances, dramatic differences in our tics, but also as you said, the comorbidities the severity of those the manifestations of those ADHD, OCD, anxiety, depression. And so we're all this the each this kind of the salad bar idea that Tourette ends up creating an all of us how do we accurately and honestly have a representation and advocacy for people with Tourette knowing that there is so much variety and that no two people are the same? It's so easy to just find ourselves, you know, stereotyping or generalizing and even well intentioned people. Is it is the solution there just to talk to lots and lots of people get lots and lots of examples elevated and highlighted. What are your thoughts on that?
Aidy Smith 06:41
So I think you've hit the nail on the head there it is to get a true representation of what's going on in the world. In order to do that you do need to tell different stories when it comes specifically to a documentary copulated. For example, you know, 10% of people with Tourette Syndrome have copper laelia. And there's this whole notion right now people saying yeah, but that's not me. 90% of us don't have it. And that in a way kind of villainize is intense and IT people do. And we need to get around that because you know, I had copper lately when I was a kid. And I've been through that, and it is extremely challenging is one of the most harrowing situations you can go through. And we can't just kind of display the 10% of people who have copper and say, Well, you're not one of us, because we don't swear. So we need to acknowledge that that is a part of it. Like all different elements of Tourette Syndrome are a part of it. I think that the tics that we witnessed that we see are probably only about 20%, in my mind of what Tourette syndrome is, we've seen that beautiful diagram of an iceberg. And the tics are kind of just peek at that everything that falls underneath that the CO occurring conditions, you know, so we got the OCD, ADHD, in some cases, autism and Aspergers, you know, you've got the insomnia, the depression, the anxiety, there are so many different things going on underneath the surface. And in a documentary format, we need to talk to people who represent as many of these as we can. And if we can't talk to everyone, because it's simply impossible to do that, we need to explain to people that it is very much a spectrum condition that there are so many different parts of it. And it's not just this kind of one fits all, one box solution. It is very complex. At the same time, we need to be able to translate the ins and outs of roughly what Tourette syndrome is, and address the stigmas and the misconceptions that are out there. Because no, not everyone with Tourette Syndrome swears some people do this is why it's really difficult. This is why we need to acknowledge that and have an understanding of it. And at the same time, we have to acknowledge that 90% of people do not sit in, you know that 10% and that they're going to be treated unfairly based on stigmas that are out there. It's those kinds of things that lead to 50% of people with Tourette's are not going to higher education or not getting employment, because they fear being judged. And you know, we've had leadership surveys come out Leadership Management surveys that have looked at managers, and they've asked managers would you employ this person, and the particular one that was focused around neurodiversity? Roughly one thirds, just just over 1/3, about 35% of all the managers who took part in the survey said that they would never hire someone with Tourette Syndrome, out of fear that they couldn't manage, wow. But you and I both know that in the job that you're doing and the job that I'm doing, when it is our passion point, we saw and we go so much farther than the everyday person on the street, because it's becomes our superpower. So that stack couldn't be further from the
Michael Leopold 09:42
truth. It's interesting too, because the complexity of Tourette and how it manifests itself differently made each of us the tics, but also the comorbidities also plays a big role in what we need because of a you know, in the ways of accommodations or how we want people to respond to our tics. So if we are In the workplace, our needs in our job could differ based on our individual, you know, the manifestations of it. And I love the idea of Trump's being kind of our superpower. And transitioning it from from a place of this is a disability to this is something that is complicated. And it also really makes me who I am. And it gives me a lot of great benefits. It's very intrinsically a part of me. I think there's, there's an unspoken message there around the piece of self advocacy that because of the uniqueness of Tourette's, and the idiosyncrasies of it, it's on each of us to be our own best advocate. Well, is that something you you'd agree with or can comment on? Yeah, I
Aidy Smith 10:38
think that that is spot on. I think that mean, there's a couple of difficult things here on that, because I know that a lot of people out there talk about Tourette's as a superpower. And then you have someone thinking, Well hold on a minute, it's not my superpower, it actually affects me really badly. And I suffer from a lot in the whole notion of superpower has come along because I want the next generation of kids to look at Tourette Syndrome. Knowing that yes, it's a hardship. And it's a challenge. But there's a big button here. Every challenge and hardship you go through will teach you something, it will teach you emotional intelligence, it will teach you cultural awareness, it will teach you empathy. And in doing those things in going through those struggles and those hurdles, combine that with finding your passion point, that is what creates that superpower. And that's not to say that life still is not going to have its you know, challenges and hurdles. When I get up every day, I consider the fact and I consider myself to have a superpower my Tourette's. But that doesn't mean that it's still not difficult that it's still not hard that I still don't have chronic pain that I still don't get depression and anxiety. But I still get all of these things and more that I just choose to focus on that superpower element to keep my mindset in the right place. So don't fall into this deep dark hole. Because I know that there are remarkable benefits from it. So I think touching upon should we be our own best self. Absolutely. And I think that we can be inspired by other people. But ultimately, no one else can tell us what to do. It's up to ourselves to follow those passions. It's up to ourselves to find those remarkable things that were greater if we sit at home, or they kind of moping in sadness about how hard our life is, we're never gonna get anywhere, you've got to have the courage to go out there. But in order to have that courage, and to really step out of your comfort zone, you have to go through pain, you have to go through challenges, you have to go through difficult moments. And just to reiterate that, I think that challenges, hurdles and pain points are a good thing. They're not easy in the moment, but they helped shape us into the people that we become.
Michael Leopold 12:42
That's that's spot on there. I mean, I think too many people have this idea of of the the perfect Tourette advocate, or the self advocate where we're always we know what we need, we know our needs, we advocate for ourselves at all times, whenever we have the opportunity, we disclose our Tourette, we're always teaching others about it. And I think the reality is so much more complicated than that. Because to your point, we do still have bad days, you know, there are days when I get up, and my tics are really bad. And it's all I can do to get my three meals to shower to get my work done and go to bed. I have other days that when I am feeling more of that confidence, and I don't have the chronic pain from my tics, I can focus a little bit more through the fog of my ADHD. I think like another important part of it is is being loving and accepting of ourselves, knowing that we are going to have have tougher days. And then to your point, seeing those tougher days as part of the journey, and we're better for it. They are tough, but they're also gaining that resilience, the emotional maturity, emotional intelligence, and we are stronger people for it. My I love the message there
Aidy Smith 13:48
a little story here. So I have a friend to actually came on to my ADHD documentary that I did. And he gave me a very good piece of advice. And it was simple. It was just be kind to yourself, a tactic that he's learned is talking to himself, like other people would talk to you. So for example, if you got up in the morning, your tics were going and your ADHD is there and you're forgetful and you're not getting through a particular job you're meant to do or a deadline. I'm not going to come around to your house and go oh my god, Michael, you're such an idiot. You're so stupid, but I would never do that. I'd say Michael, do you know what? You're just having a bad day? And it's okay, like get through this. Be kind to yourself for the moment know that you need that little bit of time. And as soon as you get through this period, you will crack on with it and you'll kick ass again. And you know, his advice was just taught yourself as if someone else would talk to you. Because that in itself allows you to be so much kinder to yourself. And it works. It works. It really does.
Michael Leopold 14:46
I love that though I absolutely there are times like I know I am my harshest critic and I see that a lot in this community and just in people in general. So with with anxiety, self doubt, depression, that can be a feature of it. I want to talk some about the The progress we've made in the current state of advocacy. So I was I was diagnosed with Tourette. When I was a kid back in 2003, I was diagnosed 2008 is about the time I started getting involved in advocacy, became a youth ambassador with the Tourette Association of America, I remember so much of the training they gave us and so much of my presentations, what, basically the message was around a couple of things, it was just very basics. Here's what Tourette's is, here's what a tick is, I can't control it. You know, it's not contagious. The basics things there. But also coprolalia was it was a big piece of it too, just and addressing that misconception. And to the point we said earlier, I think in a desire to address the media, sensationalist portrayals of coprolalia. I think the pendulum kind of went far in the other direction, and we had a tendency to ostracize or other people with in our community that have coprolalia now, not that there, the conversation isn't still there, you know that we're not still occasionally othering people with it. I am so surprised actually, this just happened within the past week, I disclosed my Tourette's to someone who saw me, me ticking. And immediately, I didn't even use the word tics. But they did they they mentioned something about, oh, what are your tics? They just knew they knew the word tics. And to me having been doing this since 2008. It was it was amazing to see people and there's a number of examples of this. I've seen in recent years how we've actually made a lot of progress in the last 20 or so years. And now people know what that word is. They know that there's more to Tourette than coprolalia. I think that's also what's enabled some of us to now say, all right, actually, no, my tics kind of are a part of who I am like they actually are. I'm glad I have it. And I wouldn't want it to go away. The more we shed that stigma, I think the more opportunity it gives us to embrace that stuff. But we'd love to hear your thoughts as well as an adult who presumably was diagnosed as a younger person, although I don't know, have you also seen any kind of progression or journey or evolution there in just general Tourette awareness?
Aidy Smith 17:08
Absolutely. And to give you the story, so when I was seven that's on my tics started coming out around the age of like six and a half, seven. And it was around about the age of nine or 10 when I actually got my diagnosis. And fast forward years and I just I never spoke about my Tourette's syndrome at all. In fact, even the word Tourette like we had to call it the T word. I was so embarrassed by it, I was so scared by an eye it couldn't be said around me it was like saying Voldemort in Harry Potter, it was just a word that should not could not use. And if I ever heard that word in public, it would send shivers down my spine and I shatter into a million pieces. Because when I was growing up, I was always made to feel so ashamed by it. I didn't know anyone in my community who had Tourette, you know, no one was there to make me feel calm or comforted by it. It was just this weird thing that I was made to feel like I was coming to some kind of circus freak. At school, I was bullied a hell of a lot. I was always made to feel like I had to be realistic about my options, I was told that I shouldn't go to university that I probably shouldn't get a job that I should just claim benefits that I probably won't be able to drive that I'd never be able to join the army or the police force. But all of my dreams and things I aspired to achieve, just seems so far out of reach. And we look at where we've come from that period of time where everything was so far removed. And we were looked at as people who could never achieve anything, to where we are now where people are beginning to have this mentality that Tourette syndrome is this remarkable asset to our lives, not a weakness, but a strength. And we have come a long way. I think a lot of that has happened, not even over the past 20 years. I think a lot of that has literally happened in the past three or four years. I think what we're finding is that as more well known people come forward and say that they have Tourette syndrome, and that filters out online. That's where we we are seeing more of this progress made. However, at the same time, I do need to caution that when we have platforms like Instagram and Tiktok, there are two kinds of content that can be created on there. That are the kinds of content with people such as Britney Wolf, who you probably know well, and Britney creates, you know, advocation content explaining what Twitter what Tourette syndrome is about her experiences of it, and also gives tips to parents and teachers and communities on what they can do. While you know honing on her own life and what's going on and it's it's hard but it's also funny in some ways. You're You're laughing with her at certain moments. And the lot of the content that I've tried to do has been very similar in that you know, explaining my journey telling stories about what have happened, where Tourette sometimes can be like funny moments I've had, let's just sad moments so that the challenges have overcome the reality See behind it what some of my tics are. So that's one side of the concept we have. Another side of the content we have we have to be very careful with. And this is where people who have tics create purely entertainment content. And here I'm talking about things like here's me baking a cake with Tourette's, or here is me reading a book with Tourette's. And I think what we have to be very careful about is people creating content not to showcase the reality of living with Tourette Syndrome, but to showcase the entertainment factor of Tourette Syndrome, because it would upset me a lot to know that someone was creating a video where their tics weren't necessarily as bad as they were playing on in that particular video, just to get more comments likes reactions from it to claim that influence a ladder. And I think that is something that we are seeing more and more crop up these days on tick tock, I just recently got tick tock, my agent told me that I was an idiot, if I didn't get it and there was a polite threat of you need to start doing that we can't have a TV presenter who doesn't have tick tock so I started using it and pushing out some of my Tourette's content on that. And I'm seeing more and more of this entertainment first style of content. And I think that that is is quite dangerous. Because what that is doing is showcasing to our youth that they will never be able to bake a cake that they will never be able to read a book, that driving is a very harrowing thing. And, again, if it's done in a realistic way, absolutely love it all for it. But my worry is if people are exacerbating things in the moment for pure entertainment versus the reality and that scares me. That does scare me. So think the people who are out there creating content needs to take a look at not just their influence account, or how much money they've been paid for branded content campaigns based on how many followers they have or how much money they're making from ads, but the community around them who that out that to inspire and to help bring hope to
Michael Leopold 22:12
it reminds me of another kind of related point. Role models within the trek community. You know, when I was growing up, for better or for worse Tourette just well, we didn't have tick tock we didn't have it's Instagram, Facebook, any of that. But it was difficult to meet people especially I grew up in the rural Midwest, and it was hard to meet people get to know people or even see people there was just less visibility around Tourette and especially neurodiversity, which we can get to later in in a bit here. One of the things that frightens me and hearing this about the entertainment factor entertainment of Tourette syndrome is if I were a kid, and I had just my tics were just starting and you're already as a kid going through, you know, trying to fit in the social pressures, it's hard, you just want to be be normal, whatever that means. And I think if I had stumbled upon a video like that, it could have sent me into a not so good spiral and also sent the message to me that my Tourette's is something that is entertaining and that you know, I shouldn't should adopt that kind of clown persona that I am I exist to entertain others would be kind of that that class, a goofy kid. If someone wants to be that I'll power to them. My whole thing would be for people to embrace their own identity and find their own calling. And I think when we see those videos, it does it does reinforce this. This is a role you have to play in society. You know, you you're differ that kind of the circus comparison you made. Yeah, definitely exposing that to young people not a good thing.
Aidy Smith 23:43
We look at the movies that are out there that take the most comical parts of Tourette Syndrome, since usually coprolalia, right. And what they'll do is they'll have a character that has the worst worst worse case of Tourette Syndrome, you know that the one percentile, not even at the naught point one percentile, they'll they'll make all these these ticks up in the moment. And that portray that in the movie purely for entertainment factor. Now, what I'm left there thinking is, in some cases, how is that any different from what we're beginning to see on tick tock, where again, it's the worst case scenario, that particular situation. And to your point, that is scary for our youth, because if they see that then they just look at their life that like they'll never be able to achieve anything, and it's always a hardship, or they think, Oh, hang on a minute, I can become a tick tock influencer, just like this person, but I have to inhibit the same kind of behavior. Because if I don't, no one's gonna think I'm entertaining enough. So it's just this vicious revolving circle. And I think it's too early to tell what's actually going on in this tick tock sphere right now. It's too early to tell, but in the next few years, we'll we'll have a better idea. I just hope that it doesn't go off on some kind of dark pathway because the internet is out there. To help inspire us, it shouldn't be there to help create more darkness and doom. Yeah, I
Michael Leopold 25:05
think in the next few years, we'll see what's going on with everything there. I would imagine that we have a few different camps of people, there are people that see this content and say, Oh, I have that, that I do that uncontrollable movement is something similar to it. And maybe this is the first path for them to ultimately getting a diagnosis. Best case scenario, it this is, this is a way to advocate it's a way to get the word out. And I'm hoping that we can get as much of that as possible. And that this might be some growing pains of the Internet right now. You know, we'll see what happens in time become curious to hear though, if there's any other topics that come to mind when you think about advocacy, and where our focus areas should be over the next 10 years, or even pick any amount of time, one year, five years? You know, let's say that when I was a kid, maybe the focus was just on Hey, Tourette's is a real thing that exists. And not everyone swears. Here's what a tick is. As you look to the future, what do you think should be, or our our biggest goals when it comes to spreading awareness, advocacy, and really getting to a world where we can tick freely?
Aidy Smith 26:11
So two things, two things. The first one is a word that I still hear used, because it's a medical word, it's a medical definition word. And it's the word comorbidities, which you mentioned earlier. Now, I'm on a mission to eradicate that word. Because I think that the word morbid, even though it's it's absolutely a medical word, I think that it's quite outdated. And so I'm on this mission to try and eradicate that word and turn it into CO occurring. And the reason for that is when I was a kid, and someone told me, I had comorbidities, I looked at the work morbid and its death disgusting disease. So immediately, as you know, you're a kid and you hear that word, you're like, Oh, my God, there's something wrong with me. I'm disgusting. And it's this word that no one's even thought about it because it's so ingrained in society. But if we take other similar words that are in the medical dictionary, like spastic, for example, that is, by all means it is a medical term. Do we use that in today's society? Absolutely not. Because it's offensive. And so I've had to speak to a lot of different kind of charities and medical organizations about replacing this word comorbidities, with the word co occurring conditions to so I think it's an update of vocabulary that is going to help people be a lot more reassured about the journey when they do get their diagnosis. So that's number one. Number two is to talk about I just call it the reality of Tourette's. And it's talking about the fact that, yes, it's a challenge, but it's also a strength, and to get the reality of that story. Because on one side, you know, if everyone's talking about as a superpower, constantly, then people are like, Well, what's all the fuss about, then if it's a superpower, then like, good on you, you don't need any help, you're already thriving. But at the same time, there's a hell of a lot of weaknesses. But then, you know, if we always talk about it, as you know, this, this pain point, this challenge, this hurdle that people are got, I don't want you anywhere around me, because you're just going to be too difficult to deal with all the time. So it's this balance of the two, it's the conversation that I would like is to have is knowing that it's going to be a difficult journey. But knowing that beautiful things come out of it. And the quote I use for that is there's strength in the struggle, there is a struggle there. But there's a remarkable strength that comes off the back of it. And that's what I want people to realize. Because ultimately, if we continue this, this amazing, beautiful narrative that we have, what that's going to do is give people hope. It's going to allow people to feel like they belong, and it's going to allow people to embrace that Tourette's rather than run away from it. I spent my whole childhood and my my youth running away from my Tourette's, it took my best friend dying when I was 24. For me to say, I need to do something with my life to help other people just like He did. And that was the reason. That was literally the reason why I decided to start talking about Tourette syndrome. And once I started, I saw just how much of an impact it could have on our youth on our kids who were getting the same level of bullying as I was when I was a kid and living in desperation. And parents who didn't know where to turn and seeing the effect that that had and started to see the outpour of messages come through from people say, oh my god, I watched this. I never knew this was possible. Thank you so much for sharing this tip. I just spoke to my son and everything has changed this week. We were in this this darkness over here, but we can see this light now. And it's it's that it's that that makes me want to keep going.
Michael Leopold 29:41
It is it's the stories you know, and seeing the progress people can make. I noticed that too when growing up and I would go to these public schools K through 12 grade what is that in the UK? What do you call that? How old were you at the time at this would be like 1011 12
Aidy Smith 29:58
Okay, so like just getting into secondary school for us
Michael Leopold 30:02
that secondary school there, okay, yeah. So I would go to these classrooms and speak on behalf of a student that had recently been diagnosed or was about to be, I would always try to get lunch with them. Because I was at the high school here, I was the kind of the cool high school kid that was getting lunch with Zachary or whatever his name was. And when I used to speak about Tourette's, I always remember the growth that you would see in the people afterwards, I would keep in touch with them and text them or email like after, you know, some of them years later, after I spoke to their classroom, when they were recently diagnosed, I keep up with them years later, and being able to see that growth in them. That was really inspiring to me, watching students go from being bullied to really owning owning their condition. That has been my inspiration throughout this. You know, I am curious to hear if I don't know if there is anything interesting here. But when you think about Tourette awareness challenges the state of advocacy in the United States versus the UK. Are there any interesting differences or unique challenges in the UK or vice versa, that you've observed?
Aidy Smith 31:11
I think that the UK is definitely behind. And that's of no fault to the different charities or organizations that are here at all, because they're fighting as hard as they can. I think that a lot of the research has taken place in the USA. And I think that because the Tourette Association has been around for now 50 years, they've just done such a remarkable job. You know, the Tourette Association of America. I'm assuming that's where you were a youth ambassador, when you were a kid, is that correct?
Michael Leopold 31:38
It was it was through the GAO, you know,
Aidy Smith 31:40
I just think that the community that they've been able to foster in terms of getting kids and adults with Tourette's together, has really paved the way for people to be able to feel like they belong. I think in the UK, we are still years behind that happening. It's rapidly increasing. As charities look at new ways of being able to get in front of people. I think that social media is really going to help with that. Because, you know, geography doesn't become as much of a burden anymore. One of the main reasons that I wanted to become a global ambassador for the Tourette Association, was to help spread that message beyond just the shores of the USA to further afield for a two fold thing, one so people in other countries could see what the USA what the Tourette Association of America were doing, and to be inspired by that. And to to allow those in the USA to begin to see your what else is going on outside of the borders of the US and to see how other countries are affected or the learning or coping mechanisms they have, or you know, a better understanding of how other people go through things. I think that it's such a beautiful thing when people with Tourette Syndrome come together and meet someone for the first time or are surrounded by people who are just like them, and they see so much know in themselves. Every time I do one of these documentaries, and I told two people, I get this newfound understanding of like, oh my God, that's exactly what I went through to, I feel understood is not such a beautiful thing. And I assume my my best friends now who I have lipid Tourette because again, we just understand each other. And it's really difficult to be able to explain and I'm sure it's similar for people who are going through something unique to themselves, they meet someone else who is going through the same thing. And they just have this element of understanding. But it's just like a breath of fresh air, you feel freedom, you feel free, because you don't have to pretend that you're something you're not. You can just put all your feelings out in your sleep, you can let yourself be vulnerable. And you can just be in the moment. And I think that's gorgeous. It's beautiful.
Michael Leopold 33:48
When I first went to it was the national trade associations conference, because back in 2008, this is when all of my advocacy work started began. That was my first time being in a room with other people who had to read Tourette. And exactly that it was so freeing, I could do my most embarrassing tics, the wildest and no one cared I was it was it was just people barely even notice at the time. And that was whenever I see like the hashtag tick freely. That's what I remember. It's being in those those environments where you're with other people who get it. It's freeing. It's It's liberating to be able to just to tick and it doesn't matter. And that is the world I'd love to see us bill with just not just to read circles, but neurodiversity in the public, and allowing people to to be themselves having society that's less judgmental, less prone to make those assumptions and letting them be their best versions. I know we didn't get a chance to talk too much about neurodiversity, anything, any thoughts there? I know you're also an advocate in that space, anything that come to mind that you'd love to chat about.
Aidy Smith 34:56
We often hear about these co occurring conditions and I alluded to the fact know that 85% of people with Tourette Syndrome have a co occurring condition. But what I find is that when a lot of people who I know when they're diagnosed in their youth, it's just the Tourette's. Everything is bundled into that Tourette diagnosis. Even if you have very clear signs of ADHD, and OCD and all these other things. They're just bundled into the tracks. That's exactly what happened with me. I got my ADHD diagnosis two and a half weeks ago, after having lived with it for years. But I was never ever aware that what I was going through what I was feeling what I was experiencing was ADHD. And separating the two out and looking at Tourette's over here and looking at ADHD over here. And having now done to document while countless documentaries on Tourette Syndrome, but my first documentary on ADHD and looking at the lived experiences that people with ADHD, I It's like I've just seen my whole life flashed before my eyes. And I think over the next several years, what we really need to focus on is how's this person got Tourette Syndrome? Yes. Okay. Do they have anything else? Okay, let's look into that. And if they have got ADHD that needs to be treated completely separately to just the Tourette Syndrome, because otherwise, you're going to have two different paths, and someone won't know which one they're meant to go down. And that has just been a an eye opening and life changing experience for me to get this diagnosis. I think that the term neurodiversity as a whole, I think is a wonderful one. It's in its infancy at this moment in time, I'm sure that in 10 years time, people will say neurodiversity is an offensive word, it should be called this, you know, because there's, there's all these changes that rapidly happen. But I think the fact that the world is beginning to wake up and see that people do think differently, is just a stunning thing. You know, there's a beautiful phrase right now, and it's taking, you know, another spin on what's wrong with you. It's what strong with you. And I think that we have all these beautifully neurodiverse minds out there that again, people may deem those who are neurodiverse to be this failure and you know, burden on society, and that they'll never achieve anything. But the truth is that the complete opposite couldn't be more true, that we do have these remarkable skill sets that the average human being just isn't able to tap into. And when we have or, you know, these these things that we've become borderline obsessed with, because we're so passionate about them, we genuinely can change the world. And here's the thing, if you look at most of the change makers in today's society, who are combating climate change, who are trained to pave the way for good, who are out there doing the most remarkable things to change the very face of the planet, most of these people in neurodiverse, most of these people think differently. It is my belief. And I can't prove this by any means. But it's my belief that neurodiverse people are an evolved state of human being. It's my belief that we are the next evolution of mankind. And what we are going through right now is that that new infancy period, but fast forward, and we will be the new normal, until we are replaced by the next evolution who is normal. And so in fact, there is no normal. We're constantly on this journey of evolution. And I think that's exactly what we are.
Michael Leopold 38:24
Further, well put any advice that you would give to adults with Tourette, the whole whole umbrella?
Aidy Smith 38:35
Gah, I mean, where do you even begin? You know, I think alluding to what Eddie said, my good friend, Eddie, honestly, be kind to yourself, and be realistic to yourself, know that there will be hard days ahead, know that it's not always going to be easy. Know that you don't always have to power through because if you don't, you're a very weak human being who can't achieve anything. Know your limits. It's okay to take a moment to just be at one with yourself to that power forward. And what you'll probably find is that, you know, you're not just this weak person you've probably workshop is off as hard as you possibly can, because of that threat superpower, which is giving you burnout. So it's not some kind of weakness. It's you working so hard, so passionately embracing something that you love so much, that you're actually kind of making yourself sick from burnout. So give yourself that time. You know, don't be afraid to venture out of your comfort zone. Don't be afraid to meet new people. Don't be afraid to meet people with Tourette because that's such a remarkable thing to do, and seeing someone through the same lens as you've seen yourself throughout your entire life. I think that if someone is in a dark and a scary place, go up there and find that passion point. It's not going to be easy. It might take a while to do it. But when you do my god, you'll look back in your life and be so happy that you did. I'd say that if you already found that passion point and you have that Superman, and you have that superpower and or supermarket. And I say if you've already found that passion point and you have that superpower, go out there and inspire other people pay it forward. For every person you see who you see, you know, yourself years before every kid who looks like they're in a dark, scary place, reach out towards their family, talk to them, help inspire them, give them hope. Because at the end of the day, our community is all that we have. And if we look after our community, that is what is going to shape the biggest change. That's how we embrace who we are. That's where we belong. And that's how we all strive.
Michael Leopold 40:38
I love that so much. Aidy, thank you for your time here today.
Aidy Smith 40:42
Thank you so much.
Michael Leopold 40:45
Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment